Things To NEVER Say To A Person With Cancer...

I recently came across an article about things to never say to a person with cancer. There really is no guidebook about how to help a person you care about when they get sick. Its like raising children, bajillions have done it successfully but there is no book or really "right" way to do it. Well it's the same with Cancer, and when it happens to a loved one, learning how to support them cannot come from a manual and there is no "right way." There are so many things to consider; the person, the illness, the prognosis, the side effects, the treatment. Its a never ending list. I've had a lot of people ask me what to say to someone they know, or say things to me. I've been through this enough times to understand that if someone is taking the time to say anything at all to me, then they have good intentions and I hold on to that and don't let their words phase me. However, someone who is new to this may not be able too and not that it matters but here's my two cents.

On the list the first thing to never say is: #1 Everything is going to be alright. I agree because it is true that you do not know what is going to happen and you cannot guarantee that everything will be alright. As a patient, although it's comforting to hear, you're thinking in the back of your head

"You don't know that."

If you voice that to said supporter, they will usually reply with

"Stop thinking negatively."

Well there is a difference between being negative and realistic and sometimes it's comforting to talk about what scares you as a patient. The problem, it's hard for you as the supporter to hear it, what scares your loved one and what could inevitably prove to be true. As a patient I have on more than enough occasions had to be the "strong one" for my loved ones.

However, you need to realize you are not the one dealing with a life threatening situation and although this is difficult for you, you are only fighting one fear, fear of losing your loved one. The patient is fighting fear on a whole other level. Fear of; leaving you, fighting the disease that causes the fear, fighting the real negativity clouding your brain, fighting the side effects and fighting the urge to quit. So although you don't want to hear about what the patient is afraid of, you need to sit down, sit up, shut up and listen. Instead of

"Everything is going to be alright"

maybe try something like

"Yes all those things could happen, but they also could not. We're in this together and we have a strong medical team who knows what they're doing, so lets focus on what should and inevitably will go right."

This isn't on the list but this is a big one for me personally. Showing your doubts with your loved ones medical team. This is why. Everyone hates needles, if you don't, ok whatever you're weird. There have been times where I have had a nurse go to give me an iv and miss. They've had to re stick me, and there is nothing worse than your support system rolling their eyes in the corner right after the nurse misses the first vein and is gearing up for the second. The first stick hurt, the second stick will hurt too. If the nurse sees you rolling your eye's, it's going to make them more nervous that they'll fail again, and therefore more likely to mess up again. Instead of judging the nurse, accept that people are human and make mistakes. Maybe I was a really tough stick that day? Come hold my hand and breath through the pain of needle number two with me. Don't put down my medical team, these are the people responsible for saving my life and when you doubt them, I will doubt them, and then I will worry about the outcome of the treatment. I need to have faith in them. This goes for doctors, social workers, nurses, anyone who is trying to help your person through their treatment.

Now granted there are legitimate mistakes that sometimes family members need to stand up and say something, but make sure its a legitimate concern. Don't put doubt in the patients mind. If you really need to voice some concerns, do it with the doc in private. It's hard enough having faith in yourself to find the strength to fight this battle, but when you doubt the people who are spearheading your treatment, you can lose all resolve. Don't be the reason we need to waste extra energy to feel confident about what is being done to keep us alive.

#2 "I Know How You Feel." Do you? DO you know what it is like to be told "You have cancer?" Do you know what it is like to lose control of your life, not because of mistakes or choices you made but for something completely out of your control. Even if you have had a type of cancer, odds are your circumstances were completely different. Your response to medications, side effects and their severity. Chemo's used, radiations, risk factors. No two cases are exactly alike. I personally have been in the 0.01% range on more than one, heck more than 5 occasions.

"This has actually never happened before? No this can't be right, this only happens to less than 1%. etc. etc. etc."

The rule of thumb with me was if there is a 0.01% chance of a side effect, plan on me being that 0.01. For example, I couldn't metabolize methotrexate or 6MP, two very common oral chemo meds. I developed GVHD (Graph vs. Host disease [where your body rejects your bone marrow]) not on my skin like the majority of cases but internally. You will never know how another person feels about anything, because you are not that person. Whether it relates to cancer or not.

The only other thing I can say about this is, it takes away from the significance of the situation. The significance it has on the patients life. When someone tells me, they know how I feel, it makes me feel like, I'm over reacting and shouldn't be as upset about it as I am. It equates it with the feeling of

"well it happens to lots of people, so why am I significant. Why should anyone care?"

To show you care say something along the lines of

"I will never be able to understand what you are feeling, but if you want to talk about it, I am here to listen."

Or simply

"How are you holding up?"

If it's me, I usually respond with

"I'm ok,"

but I'm always grateful you asked. Even if I'm thinking,

"How the hell do you think I'm holding up? I'm pissed off and feeling like crap."

It really depends on the day.

To expand on that, the best questions I get asked are

"Do you have treatment today?" "Whats involved?"

Questions that make me feel like you not only care, but are genuinely trying to understand what I'm going through.

#3 "Try to keep a positive attitude, relax and avoid stress. It can help you heal." This one entirely depends on how its worded. With me, I constantly need people to remind me it's ok to take a break and take the time to heal. I want to jump back into work. I want to be doing something and I don't want to be missing out on life. However, I do need to take a step back and let my body heal. With that being said, when people tell me to eliminate stress from my life, I want to scream. Essentially telling someone that something in their life is stressing them out and stress causes illness means that they are doing something wrong and are to blame for their illness. Also don't tell me to stay positive, it makes me feel like I'm not allowed to feel upset for what has happened to me. If I feel like I'm not allowed to be upset, then I will shut down, shut you out and wont talk about it, therefore causing me more stress.

Someone once asked me if stress from the treatment was contributing to my hair loss and if I could just relax it wouldn't be as severe. Well, no, it was not stress, it was a side effect from the chemo. However, by saying this, I shut that person out and did not vent to them about what was indeed stressing me out anymore because they had single handedly added themselves to that list of stressors. I completely agree with the article in how to handle this. If you see a source of unease or stress, ask what you can do to help. For me, my bosses just kept reminding me jobs were waiting for me. For others it could be

"Is there anything I can do to give you some more you time?"

It doesn't suggest that there is a stressor but it gives you an opportunity to help. Also feel free to just help, because if the patient is like me, they wont ask for it. Feeling like a burden really makes this situation unbearable, because not only are we in disarray but we're causing it for others.

#4 "We can beat this." The article and I have very different interpretations on this one. For me, I like hearing it. I like knowing I'm not alone and have a strong support system. On the other hand, I can also feel like

"We, there is no we, I'm the one with the disease."

You don't want to say

"You can beat this,"

because that goes back to point number one. The way this should be worded (because its all about the wording) is

"If anyone can beat this, its you!"

That implies you have a positive attitude, you can overcome adversity in your life and it's not concrete. Cheerleaders can be annoying, I know this because I was one, so don't be a peppy cheerleader, be a cheerleader who can also be a listener.

#5 "Now Now Don't get yourself worked up." If someone said this to me I would punch them in the face, at least in my mind. You have no right to tell me I cannot get upset, or be angry, or feel pain. NO RIGHT! You are making me feel like a burden with this comment and I already feel like not only has my life been ruined but I'm affecting yours too, so thanks for confirming it. This should be an obvious one but I really do feel that common sense is a rare commodity these days. You're supposed to be a shoulder to cry on, not the nail in the emotional coffin. When you say this, you're basically saying,

"You're over reacting, its not that bad, I could handle it."

Well, then go ahead, take my place, and oh well you're at it, this is me no longer confiding in you, opening up to you and therefore causing more stress for myself by holding in my feelings. Job well done, support system. -_-

If you have nothing to say other than the above and can't manage something along the lines of

"Its completely ok to be upset, Its ok to cry, it's ok to be angry"

then you have no right to be someone's support system and you need to evaluate your lack of empathy. No seriously, you are probably the type of person who drowns puppies and puts anthrax in the mail. Ok maybe not that bad, but you get my point. If you really don't know what to say, and I get it, I've had people who have had no clue, and there's been times where I've had no clue, just give me a hug, hold my hand or send me a heart emicon. That will suffice.

#6 "Congratulations! You're done with chemo/ radiation or both." This is hard for both parties. You're excited they're done treatment. They're excited they're done treatment, but something about this is hard to hear. When I was done, I got a ton of well wishes and was grateful for every single one. People kept asking me how I was going to celebrate, when really all I wanted to do was sleep. I know I should have been just as excited, I know I should have been MORE excited but something inside me wasn't ready. Just because you're done treatment, doesn't mean you're done. I finished over two maybe three weeks ago, but I'm still recovering. I'm also still waiting for results. For me, I prefer to celebrate good results than the end of treatment. Yes I'm excited but it doesn't mean anything. Until I hear, you are cancer free, I have nothing to be excited about. This is an easy one, say something along the lines of

"How do you feel now that you're finished treatment?"

I can almost guarantee the results will be the same: anxious, nervous and relieved.

So for anyone wondering the age old question of what to say or ask, pretend you're on a date. Tread carefully. Just because it's your mother, sister, boyfriend, daughter, lover, boss, best friend, whatever, they're experiencing a life altering event and what you say can really have a strong effect. Don't be afraid to ask questions, and if you're not sure, a good place to start is,

"I understand if you don't want to talk about it, but I don't know and I'm trying to understand, is it ok if I ask...(insert question here)?"

Also, with all of this said, none of this was directed at anyone specifically. Odds are I've told you if you've said something to bother me so don't think a story is about you. You will know if it was you I was referencing, I would have told you.

One last note:

Any support is better than none at all. If you're going to support someone, never make them feel like a burden, because trust me, they're feeling it already and you validating that will only make them feel worse. Just let them know they're not alone.

It Hasn't Hit Me Yet, But Still 2 Tests To Get

"All visible signs of Cancer are gone... "

But... I still have two tests left. This was the first very big hurdle though, and I am very confident the tests are going to come back amazing. I just wanted to clarify for those who were unsure, and asking me. Yes you can't see any cancer, its unlikely but it doesn't mean it's not there, so we have two tests left to confirm the already amazing news. The odds are- Ever in my favor! (Hunger Games... haha get it? No... Ok moving on.)

There is nothing that makes you want to be as healthy as you can be than seeing other people living their lives to the fullest. It makes you want to be living your life too! Me- well I get great news and the response is usually the same, overwhelming.

"Courtney, You have no visible signs of cancer! What are you going to do now?"

I almost always reply to good news...

"Umm I'm going to sleep."

My theory is that it takes me a while to let something sink in. I overwhelm myself trying to get it to sink in. Ok, my recent news hasn't sunk in yet.

I don't think this news has sunk in because I still have two tests left. I've just gotten over the first MAJOR hurdle. I still have a PET scan and a PCR test. A PCR is a blood test used to detect whether my leukemia is back. It stands for "Polymerase Chain Reaction". Basically it is a genetic test to make sure my genes have not translocated. In English: when genes 15 and 17 switch places, its called translocation and it means my leukemia is back. Your genes should be 13.14.15.16.17.18.19.etc. etc. but when I have leumkemia or APML specifically, mine would be ordered 13.14.17.16.15.18.19.- the indicator for AML type 3. So with out the science lesson, we want them to come back in order with no hint of leukemia. (I understand this like the back of my hand but couldn't take and handle a science class if my life depended on it. Typical.)

The PET scan, well that uses radioactive dyes to detect abnormalities in the cells. We need that to come back with positive results too.

When both of those things happen I'm in the clear, officially. I have no doubt they will come back fine. I'm tired, and still feeling slightly off but I'm recovering from toxic chemotherapy and high doses of radiation where I was microwaved. A little recovery time is pretty much necessary.

The support has been so overwhelming and amazing! I can't even believe that I'm only 106 views shy of 42,000 since I started this journey 3.5 months ago. The skype dates, the emails, the letters and cards, the texts, calls and bbms, the care packages, the visits, the events, the facebook posts and messages. They've been my rock. They are what keep me positive and excited and in a weird way, safe. If I've forgotten to respond to some, I promise its the chemo brain. It really hates me. But I've gotten the well wishes and am soooo grateful!

I have 4 weeks left in New Jersey. I have people I want to see while I'm down here and things I want to do before I go home. So there may be some fun posts to come, sort of like in the beginning. No alcohol involved yet because my body is still in recovery mode. (I'm still craving that Extra dirty kettle one martini with extra olives, or a Ceasar, or frozen margarita. HMMMM yum).

I'm going out with one of my girlfriends this weekend- we're going to paint pottery because I'm such a bad@$$. I'm so excited I can't even handle it.

Hunger Games: Catching Fire next week with mom and the seestor and Jakk attack! (I actually may reread the first two books one more time before we go because I've already forgotten. Chemo brain is really coming at me with a vengeance.)

Hopefully I'll get to one more Eagles game, preferably one where we win because I'm starting to think I'm bad luck and would like to feel good juju vibes.

Oh and I'm absolutely going to try and go to some yoga. Yesterday morning, because I hadn't slept all night, I thought about going to the morning class. Keywords: thought. about. it. I even looked at the schedules. Baby steps. Who knows, next time I might get dressed and the time after that may even think about it, get dressed and then actually go!

So first things first on the normalcy agenda: stop being a night owl. Clearly I'm so excited to get back to work at the bars that I'm already on the sleep schedule required for working at them.

Then once I'm awake during the day, school work. I've started a little bit.

Yay! Just good things to come! I can feel it!

4 Weeks. 4 Weeks. 4 Weeks.

T.A.F. - And The Results Are.....

"An Arrow can only be shot by pulling it backwards. So when life is dragging you back with difficulties, it means that its going to launch you into something great. So just focus and keep aiming."

The arrow has been my symbol of hope for this adventure. This speed bump has caused me to sit back, slow down, re-evaluate, and get excited. Cancer was a set back, a HUGE, sucky one. But, it put me on the launching pad to shoot forward with the rest of my life.

Sunday night, I rolled around aimlessly in bed, for hours. I couldn't sleep. I knew what Monday morning brought. 6 am... 7am... 8am... the last time check I remember was 9am. My mum woke me up at quarter to twelve and I laid in bed cursing the world. It was cold, and I didn't want to get out of bed. I finally got up, threw some real clothes on (you know as opposed to fake ones) and sat back in bed. Going through my pharmacy of medications, I created my cocktail. 1 Perc, 1 xanax, 1 Valium, 1 Ativan, 1 Codeine. Ok this should do it I thought. My mum's best friend K was visiting in town and so we got in the car and were out. I warned her, this could get interesting.
We stopped at Wawa

"Um are you able to go into Wawa?"

My mum asked. In my most offended tone-

"Mom, this stuff hasn't even touched me."

I got my biscuit (OMG I miss Tim Hortons) and we were really off. My tolerance is really too high.

We got to the hospital and didn't have to wait long in the waiting room. A, the nurse, took me back to get my vital signs and all I was excited about was the fact my weight had stayed the same. Hey, its the small victories Then off to the cow oven mitts room.

I stripped, knee socks matching the cow mitts which very much excited me. Sheet on top and ready to wait for the doc. I quickly popped a dilaudid while on the table, my anxiety was rising faster than the mercury in a thermometer in a heat wave.

So, the meds and why I knew I needed to be sedated. If all went well today, Dr. D was going to remove the "thing" inside me. Said thing is a device that was surgically implanted to help Dr. D2 during the high dose radiation. The device helped him to guide the tools that would be inserted to get the radiation beam to go exactly where he needed it too, and to help protect the healthy surrounding tissue. It was the procedure that brought on tears each time because it was so painful and I couldn't wait to get this thing out. However, it had been surgically implanted, so I didn't expect its removal to be a piece of cake either.

Dr. D came in and got the speculum ready. It was SO painful for him to insert. This was already not going well. Any woman who has had to visit her OB/GYN knows it can be uncomfortable and awkward but painful shouldn't be on that list of adjectives. I gripped my hands together and closed my eyes and tried to breathe.
I didn't see the scissors, but hearing them, inside your lady bits, its scary as hell! They had to cut the stitches and I could hear each slice of the scissor. I kept trying to picture the Eiffle Tower with each breath, Black Christian Louboutin pumps and a sturdy gentleman and I kissing underneath France's beloved structure. It was the first image that came to mind and I kept going back to it, every time I thought I was going to faint from the sound of a slice.

I can't even describe anyone else in the room because I was on mental breathing duty. There were four or five stitches and I don't know how I wasn't shaking. Maybe I was. Finally once the stitches were cut he gently pulled out the little thing. (Which in reality wasn't that little). Normally I would have taken a pic, but it wasn't something I wanted to remember. I was tender and it hurt like hell. When everything was out he did his exam and the tiniest of movements and touches hurt. (This is not going to be good for my impending sex life.)

"You have had a complete response to the treatment."

Wait whAAAAAT? It was so refreshing to hear. It was what I needed to hear. It was to be completely honest, not what I was expecting to hear.

Flashback:
Dr. D pulled my parents aside after my first surgery months ago. The prognosis wasn't good and this was going to be one hell of a challenge.

CHALLENGE ACCEPTED!

We went in his office to discuss and FINALLY the words I had been waiting to hear, had been said, again.

"You have had a complete response to the treatment!"

There were lots of questions but as per Courtney

"Um so when do I get to start with the vibrators and this whole vaginal dilation thing?"

- 4 weeks. UGH, the one thing I was excited about, but all good things are worth waiting for. As we were walking out of his office Dr. D said

"I was really surprised at how well you handled the procedure."

To which I confidently responded

"I'm not going lie, I'm slightly sedated."

With a smile he returned with a quick

"Thought so."

Now, am I out of the gate yet, no. BUT most likely YES! In four weeks I have to have a PET scan to check my lymph nodes. I have to wait the four weeks because all of the radiation and treatment will have caused inflammation that could lead to a false positive. It's too intense and expensive a scan to just do on a whim.
I will have one follow up appointment after that and then be done! DONE! DONE DONE DONE! (Until my next check up.)

SO where does this leave me. For the next two years I have to have a check up every three months. If there is the slightest of symptoms that something could be wrong, I have to high tail it to a doc.

HELLO PARANOIA- nice to meet you, I think we're going to be the best of friends.

After those two years, I have to have a check up every 6 months for 5 years. I have to continue hormone replacement therapy as well but that didn't surprise me. SO basically, now lots of doctors appointments for the next few years, again.

In the next four weeks we will check as well to make sure the leukemia wasn't brought on by the radiation. In the mean time and for now.

"Hey cancer- Fuck you, I WIN!"

The car ride home was a blur. I was stoned out of my mind. (Thanks meds for kicking in too late...as usual.) I remember blabbering on about salsa. We even stopped and got some. I remember passing out in the car (because I remember being woken up.) As we were walking in the door I stopped and stared at the clouds-

"Its going to snow."

Everyone was like yea ok whatever. (It snowed this morning- boom stoned weather predictions!) I tackled my sister's bff J when I walked through the door, he wasn't mad, in the slightest. I spilled vanilla scented oil all over my uggs which are not brand new, but look brand new. Just Peachy. I inhaled a quesadilla like it was my day job. I texted a few people (Oh lord I'm sorry for those conversations I can only imagine.) I had my iv fluids put in, I passed out. I woke up, had a quick skype date with one of the besties M, and then passed right back out. Writing this hasn't been easy because I'm having a drug binge hangover. But honestly, YAY! NO more painful $#!%. Or at least painful to the point of needing to be incoherent.

So its done. I did it. I'm praying that its done for good. That this will never happen to me again. Thanks for the offer but I'm completely content with 4 times. I'm ok with follow ups and check ups because I'm alive and rocking it. I still have some major recovery to go through but did I mention I did it! I've got this. As someone close to me says I'm ... no he and I BOTH are TAF! - Tough. As. F***!

SO now, reintegration back to normalcy begins! I'm ready to pull a Katniss and shoot this arrow forward that is my life! BOOM!

You're Worth The Whole Damn Lot

"Even if he/it/whatever breaks your heart, I feel like you're underestimating your worth."

Words that I've heard over and over but every time I feel an ounce of rejection I never listen to them. Why is it when we look in the mirror we see everything that we are not. Wouldn't it be nice to see what other people saw, to see what we are? To take a minute and listen to all the things people have told you about yourself, that are positive! Not because they were just saying something because they thought you needed to hear it, to make you feel better...

"NOOOO You don't look Fat. Oh he totally is going to regret breaking up with you. You look awesome bald."

but because they actually meant it, because it's true!

Why can we as humans not introspectively agree with what we are told about our selves, that is positive?

SO here it is for me.

I've said it before I'll say it again, and this time not subtle. I cannot have kids- radiation, chemo, killed that for me. I can't remember anything... (I apologize if I've repeated things 100x, forgotten basic things or forgotten to respond to emails and messages) -Thanks chemo for the memory or lack thereof. Right now, I can't have sex. Radiation & chemo, killed that for a while. I mean if we're playing the blame game lets say

"HEY Cancer- you've F****** $#!% up for me."

However, could this be the universe forcing into my skull what people who know me and care about me have been trying to tell me all along? You're pretty awesome even without kids, memory, sex life, etc. i.e. things that I think make me... different, imperfect, ::insert negative adjective here::

Your personality is so top notch, your outlook is so positive, you're randomly talented (make-up artistry, hula hoop instructor, bracelet maker, etc.), you're funny and witty (although half the time its not intentional), you're smart... ok book smart, and smart about really random things (close friends know my secret intellectual genius topic) and well ok smart-smart is debatable, NO math please. (Natural blonde after all). You're pretty, some may say hot, some may say gorgeous and realistically some may say not at all you're gross, (But to each their own and eff them, we're not talking about those people right now.)

Is it possible that everything I think I don't have/or am not right now (or ever) could be overlooked because all my good qualities outweigh what I'm "lacking"?

Life is one big pros and cons list. Isn't that what love is after all, a pros and cons list. I mean seriously, the "Perfect" person is not actually perfect. BUT, what one person may see as someone's flaws, i.e. what makes them different, and obviously their good qualities that make them different, is what makes them perfect for you. Hear me out.

SO in search of "perfection". It's not about being perfect as an individual, as in the perfect person. It's about being in the perfect situation.

It's about someone making you FEEL perfect, because you're not. No one is, but finding that person who can make you FEEL perfect, even with your imperfections, that's perfection.

Not pointing your imperfections out to you, but embracing them and loving them, because that's what makes you different and that's what makes you you.

SO, do I wish I was more stylish, yup. Do I want my long hair back, desperately but it will grow. Do I wish I could have kids, someday. Do I want to have sex tomorrow... hahah for me to know. Do I wish this and that about myself... of course. Do I want to lose 30 lbs yes, will I prob be WAY too skinny, well duh but whatever, I see myself completely different than others. Because I like every other human underestimates my worth. Unless you're one of those cocky bastards, but once again we're not talking about you.

However, when I look at myself I see things that someone who has never met me wouldn't, and maybe even people who have met me don't. I see fight. I see a body that has been through battle after battle in a seemingly never ending war, full of obvious battle wounds... but they're the illustrations to a story that is mine. A story that I'm damn proud of, because although it has made me "different" and "imperfect" it has made me, well me.
I see someone who wants to do a million things with her life, and some may say I'm indecisive but I say, I'm interested in multiple things and don't want to be complacent or bored or ... unhappy. I see someone who goes after what she wants... and right now that is life, to be alive. Not just to live but to live fulfilled.

It may not happen tomorrow. It may not happen next week, but life happens and I'm so lucky to be alive. So, although I underestimate my worth, it makes me strive to be better, it reminds me I'm alive and what a beautiful gift that is. A gift that reminds me that I am worthy. I may not see it or believe it sometimes, but luckily I have those people reminding me that the superficial things I feel I lack, doesn't take away from who I am or what I deserve, it makes me who I am, and that much more deserving of not perfection, but the perfect situation.

Oh and just because .... Fuck Cancer. I've said it before I'll say it again. You may win a few battles here and there, but there's no way in hell you're going to win this war. I'm UNKILLABLE. Oh if only I could actually be a Vampire ;)